According to the new pediatric guidelines, for Ellie's age, height %tile, and gender, her systolic blood pressure [top # of BP] should fall around 111 mmHg. Ellie's average without blood pressure medication is 124 in the LEFT arm only and normal in the right arm.
High blood pressure in a child is usually due to cardiac issues such as narrowing of the aorta (a large artery that branches off the heart) or renal [kidney] issues. However, with the increasing rates of childhood obesity, doctors are seeing more and more hypertension related to weight, similar to adults.
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| Flashback: October is Down Syndrome Awareness Month |
In August, we were able to rule out all cardiac issues so that is not the cause of her hypertension. We are currently evaluating her kidney function. Many doctors start off with a basic metabolic panel that looks at things such as glucose, sodium, potassium, etc, but the main values that a physician looks at from that lab study is BUN and Creatinine. I won't get into what those things are for, but high levels of BUN and Creatine can be a sign of impaired kidney function. Ellie's were normal. Other, more in-depth testing include assessing Renin, Aldosterone, and Angiotensin - again, I will spare you the details of their function. Ellie's Renin levels are high. Renin is an enzyme that is secreted by the kidney that helps regulate blood pressure. One of the causes of high renin levels is renal artery stenosis, which is is the narrowing of the artery that supplies blood flow to one or both of the kidneys. This is something that is very rare with systolic BP usually above 170 mmHG and it is highly unlikely that Ellie has this . . . BUT, as the nephrologist said "this is Ellie". Plus, she has been on clonidine for years and she is also on a calcium channel blocker BP med so we don't really know how high it would be without these medications. At this point, we are working on scheduling a CT with contrast (angiogram) or her kidneys, but it is not considered urgent.
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| Flashback: October is Down Syndrome Awareness Month |
Hypertension in a child is typically diagnosed when the systolic reading is 10 mmHG above the 95% tile for age, height, and gender. First line treatment for high blood pressure in a child is a calcium channel blocker - i.e. amlodipine. (Calcium Channel blockers tend to end in "ipine.) A few months ago we started Ellie on Norvasc. We some mild improvement in her blood pressure. The nephrologist says that kids typically end up on higher doses than adults due to their higher metabolic rates so he bumped up her dose.
I don't know what happened and I don't understand it. I measure Ellie's blood pressure with an automated cuff. This is the same cuff that I have been using for months. After we increased her Norvasc, I noticed that her systolic readings were back into the mid-120s. A few weekends ago, I took her BP and it was in the 130s. I waited a few hours and she was 140 mmHg. I didn't believe it. I switched out the cuff to an adult one and took mine. The I compared it to my Qardio cuff that I use with an app. Both of mine were the same. So . . . Ellie's reading was accurate. I waited an hour and she was 147 mm HG. Note that she had both clonidine and the higher dosage of Norvasc in her system. A BP that high in a child is dangerous. I had to call nephrologist on-call who told me to immediately give her clonidine (it is pretty fast acting) and that if it was still in the 140s in a few hours, she'd have to receive IV anti-hypertensives in the hospital. It was odd. I don't know why this happened, but the clonidine did work.
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| Uh huh . . . how long do you think she'll keep that on? The eye patch is over her good eye. The thought is the eye that turns in will correct itself. We've tried glasses and then keeping her good eye dilated with no change (okay, she refused the glasses). So this is our last ditch effort. |
A few days later, the nephrologist upped her dosage of Norvasc again and it seems to be working. Her BP has been averaging 110/60 so we are pretty happy with that. Her renal CT scan with contrast still isn't scheduled as we are trying to do it the same day as her ABR and cecostomy tube replacement. I hate waiting, but I only want to put her under sedation once.
The blood pressure machine that I use for Ellie is by Contec. It is no longer sold on Amazon, but eBay has it and a few online medical supply sell it. I have tried several automatic and manual cuffs, but this machine is the ONLY one that has a TRUE pediatric BP cuff. Most the ones marketed as pedi are actually infant cuffs. A blood pressure cuff isn't just about length to wrap around the arm. It is about width. It is supposed to cover a specific portion on the upper arm. If the cuff isn't wide enough, the pressure will read higher. If the cuff is too wide, the pressure may read lower.
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| photo: uptodate.com |
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| Some cuffs are labeled with #s. i.e. a child cuff may be labeled as size 9 so it is good to read the measurements. |
While the Norvasc is working, it comes with an unfortunate side effect. For Ellie, it is significantly making her constipation worse (it may cause the opposite problem in some people). She used to get 250 mL of saline enemas through her cecostomy every other day. She is now getting 250 mL SMOG enemas [saline, mineral oil, and glycerin] through her tube 2-3 x week - the max we can do and then 2 rectal ones a week - also the max. It is frustrating because she is still only having a bowel movement every 5-7 days. Seriously?!?! She has a freaking tube in her colon for this stuff! Unfortunately, it is something that Ellie will have to suffer through because I really don't want to her to be at risk for a stroke from a really really really high blood pressure. If it gets to where is going more than a week, then we will have to figure something out because colitis and bowel perforation would suck.
Anyway, that is the big blood pressure update. My next post on The Chronicles of Ellie Bellie Bear will be fun! Horse therapy with Jack? Yes! Seeing the dolphins at Sea World? Yes! Reuniting with friends from The Wish Connection and seeing a Tim St. John, the magician? Absolutely! What about Morgan's Wonderland, an amusement park designed for children and adults of ALL abilities? What fun!
Fun Photo Flashback:
